Tuesday, February 6, 2007

GINA Talking Points

When you talk to a member of an elected official's offce you should introduce yourself and talk about your relationship with HD. Highlight your personal experiences with the disease and how important the vote for GINA is for you and your family.

In addition you should make sure that most, if not all, of the following points are brought out during the discussion.

  • Huntington's Disease is a devastating, hereditary, degenerative brain disorder that slowly diminishes a persons ability to walk, talk, think and reason.
  • HD is caused by a defective gene, and every person who has the gene has a 50/50 chance of passing the gene along to their children.
  • HD affects both genders and all ethnic groups equally.
  • Presently, there are no effective treatments and no cure for Huntington's Disease.
  • Individuals with the defective huntingtin gene usually develop symptoms of Huntington's Disease between the ages of 30-50. Until then they live full, normal, healthy lives.
  • Fear of genetic discrimination dissuades many at-risk individuals from entering into clinical trials, or undergoing genetic testing which hinders progress towards treatments and a cure.
  • HIPPA and the ADA leave gaps in privacy protections for individuals who are affected with conditions that have a genetic cause.
  • The Genetic Information Nondiscrimination Act (GINA) would ensjre that no person would face discrimination in employment or insurance based on genetic history.
  • GINA is necessary for those living at-risk for disease like HD to feel protected if and when they decide to be tested or enter into a clinical trial.
I'm not sure why the following wasn't included on HDSA's GINA talking points but I'd add the following:

  • A positive gene test may result in a person being unable to acquire health insurance years before any symptoms of HD are manifest and as a result going on a health care program funded by public taxes when they could be under an employer funded health care program.

HDSA Legislative Issue Positions

Erin Dorrien is the Advocacy and Family Services Manager for the Huntington's Disease Society of America. She comments in a letter to HDSA Advocates "We would like to harness the energy from our efforts with GINA to not only educate your communities on the importance of this legislation but educate your communities about HD and HDSA.

Due to clutch (auto) problems I was unable to participate in the HDSA Advocate conference call on GINA, but I did get the information packet and since Erin has asked that this information be shared with the community I thought I'd take the liberty here to share with my cybercommunity.

So what ARE HDSA's legislative priorities? I think I'm at liberty to present them. I suppose the HDSA lawyers will contact me if that's not the case.

Genetic Privacy and Non-Discrimination: HDSA supports federal and state legislation prohibiting the disclosure of genetic information to employers, insurers and other institutions without the permission of the individual. Also, HDSA supports federal and state legislation that prohibits employer discrimination based on the outcome of a genetic test or a family history of genetic disorder. Current federal law (HIPAA and ADA) contains several gaps and ambiguities that can potentially lead to genetic discrimination.

NIH Reauthorization: HDSA supports increased funding for NINDS (National Institute of Neurological Disorders and Stroke) and other institutes at the NIH that deal with Huntington’s Disease (HD) and other related brain disorders. This funding will insure continued money for research. HDSA opposes any measure that would abolish or consolidate any of the independent institutes within the NIH.

Medicare Part D/Government pharmaceutical price negotiation: HDSA is not opposed to the government acting as party in negotiations with pharmaceutical companies on the behalf of Medicare recipients. However, HDSA does oppose the “Medicare Enhancements for Needed Drugs Act of 2007.” This was introduced on January 10, 2007, and would require the Secretary of HHS to “negotiate contracts with manufacturers of covered part D drugs when the drug is a single source drug without therapeutic equivalent.” The fear is companies developing innovative therapies, which would be considered “single source,” will be discouraged from pursuing future breakthroughs. With the government negotiating the price of single source drugs, companies may decide developing new therapies is too costly. The law would discourage the development of therapies that could substantially benefit those suffering from rare diseases.

Stem Cell Research: HDSA supports the use of stem cell technology, in finding a cure for Huntington’s Disease, consistent with the recommended guidelines of the National Institutes of Health and as permitted by law. Stem cell research may eventually play a role in the treatment of Huntington’s Disease. HDSA supports the Stem Cell Research Enhancement Act, which would increase the number of stem cell lines available for use in federally funded research, and would follow the guidelines set forth by the NIH.